Between Two Worlds: Living with A (Semi)Invisible Disability
Blog Post by Rhiannon De Cinque - YDAN Team Member
I was diagnosed with cerebral palsy (CP) at three years old. But growing up I was never really encouraged to identify as a person with a disability or to engage with communities of people with disabilities. My family and people close to me were worried that the ‘disabled’ label would hold me back and cause others to think of me differently…and I was too.
My CP is mild, so the way it affects me is generally not as severe as the way it affects others with CP. Only the bottom half of my body is affected, and therefore the type of CP I have is called spastic diplegia. When I was very young, I wore splints on my legs to help counteract the effects of my CP and guide my body to grow in the most ‘normal’ way possible. The splints worked so well that by the time I was around 11 or 12 I didn’t have to wear them so much.
At the time, I thought that this was pretty much the best thing ever! It meant that I could finally go to school without my splints. I really just wanted to blend in. I didn’t want anybody to notice me and this newfound freedom meant that I could finally fade into the background. I lived happily in the faded background for more or less the rest of my school experience. I felt very lucky to be able to do so and my disability became a topic that I tried to put out of my mind.
My successful attempts to put my disability out of mind presented a problem once I hit my 20’s. I started to notice some changes in the way I moved around. Physical therapy is an essential and typically hugely beneficial treatment for people with CP but because I was no longer thinking of myself as a person with a disability, I essentially ignored the fact that I needed to be regularly undergoing physical therapy.
The way that I walk has always been a little groovy. But by the time I hit my 20’s I had developed a rather distinctive limp. It took me a very long time to realise this had happened. I mainly attributed it to the fact that I can’t watch myself walk and friends probably didn’t see mentioning my limp as a fun conversation to have. Either way, the limp was here to stay and all of sudden my previously invisible disability become very visible.
My world completely changed. I could no longer disguise my disability. I was forced to start thinking about my future as a disabled person and what that would mean. CP itself is not degenerative – but the human body is. The effects of CP have the potential to intensify with age as your body naturally weakens. This is something I think I have always known, but never really cared about before it started happening to me. This does not mean that everybody with CP is doomed to get worse as they age; but it does mean that the older you get, the harder it is to get away with not taking your disability seriously. Overall, this experience became a much needed wake-up call for me.
All the physical stuff aside, one thing I never anticipated having to navigate as a person with a newly visible disability was all the weird and intrusive questions. When people (usually strangers) notice my limp they often ask some pretty blunt questions, such as “why are you walking like that?” or “have you hurt yourself?” I never know how to reply because the answer to those questions is not quick and simple and it's often not a conversation that I am comfortable having with people who I don’t know very well.
For a long time, I tried to be very polite when people asked these questions. I didn’t want to upset anybody. So I would give a short and sweet answer that usually resulted in an awkward silence. However, as I have gotten older I have become more comfortable with making other people feel uncomfortable. I’ve found that sometimes this is the only way to speak openly and honestly about issues surrounding disability. However, there are still environments where I try to avoid these conversations, such as in some of my workplaces, where I have been concerned that the way I speak about my disability could affect my advancement. For these reasons I have sometimes found myself going along with whatever the person asking the question assumes, often by agreeing that I have hurt my leg and assuring them that it will get better soon. I never really stopped to think about what it meant to not be honest with others, and therefore myself, about who I am.
I have always believed that having mild CP is a luxury because, for a long time, mild meant almost invisible. This meant that I didn’t have to talk about my CP if I didn’t want to and people didn’t have to know. Almost as if I could choose if I wanted to be a person with a disability or not.
The reality is that while I can choose how I identify, CP is a lifelong condition. Regardless of whether or not I claim my disability, it is always going to be there. CP is part of who I am, not just because it informs the way I move but also because it informs the way I view the world. More times than I would care to admit, accepting this has been more difficult for me. However, I’ve come to realise that there is power in acknowledging my status as a person with a disability.
In 2018 I choose to write my honours thesis on representations of disability in contemporary art. To expand on my research I applied for a job with the Youth Disability Advocacy Network (YDAN). I admit that, at the time, I didn’t really know what I was signing up for. When I first started presenting workshops with YDAN I had rarely identified as a person with a disability publicly but, all of a sudden, that was a very big and important part of my job. I didn’t realise there were so many people out there who could relate to my experience, and so many people who could benefit from hearing about it. I didn’t realise the power of self-identifying and how this would come to benefit me.
I have lied so much in my life – about why I walk the way I do, about not being in pain when I am and about not being tired when I’m exhausted. All because I never wanted anybody to think that I am not capable and I never wanted to burden others with my troubles. I have often felt that people only want to hear from people with disabilities when they’re telling stories about ‘overcoming’ disability and doing extraordinary things ‘despite’ of disability. No one wants to hear about how sometimes having a disability kinda sucks. For me, however, being honest about my limitations has become liberating. Acknowledging my limitations has helped me to set boundaries in my life with the people close to me but also with myself. By being honest with myself and setting these boundaries, I am slowly learning to how to make self-care a priority in my life.
I still feel as if I operate between two worlds – the disabled world and the non-disabled world – and I am not yet sure exactly where in either I belong. However, the more I share my experiences with others, the more I feel that maybe one day all the parts of me (disabled and otherwise) can exist in one place.
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